2 questions with Aunt C

Aunt C is Garrett's mother.  At the start, I was pretty apprehensive about this blog project, particularly writing about Garrett.  Aunt C's early support and encouragement really inspired me to give it a try!  And she agreed to be the next email interviewee.

Aunt C and baby Garrett, 1977

I should have asked how her Farrah Fawcett hair looks so good after having a baby!  
Instead I went with this:

Question 1: When did you suspect that Garrett had FA?

Garrett was diagnosed with FA in 1997 when the gene test was run by Dr. Pandolfo at the University of Montreal. We had met the doctor at an FA seminar right after the gene was discovered. The question about FA had always been there since Garrett’s aunt had FA. The doctors could not say for sure, however, until the test was developed. Garrett had some acute illnesses when he was 6 years old and that always conflicted with the diagnosis of FA early on.  

Power hitter!

FA did not slow Garrett down from living life as a young person should. While it was generally clear that his balance and coordination were off, the “what to do” did not have an answer. His class cheered when he completed the required number of laps around the school for gym in elementary school, even though he was the last of the last. He loved sports and played Little League for a while. When a teachers’ strike hit in the fall of his eighth grade year, street hockey became popular and the hockey stick gave him balance and a chance to play with his buddies.

Why didn't my teachers ever go on strike?

Sports continue to be Garrett’s favorite pastime.  He will be following the Boston Marathon and looking for AT!

Question 2: Can you share an experience of working with FARA?

FARA has been instrumental in bringing together researchers and doctors to investigate treatments for FA and to learn more about the pathways of this disease. In the last 5 years, there were more scientific conferences dedicated solely to FA then ever before. Conferences to update families and patients, and to provide open dialogue about concerns, have been held the last couple years in Philadelphia. FARA has a registry for FA patients so they can be notified of any new information or have the opportunity to participate in a study. Garrett has responded to questionnaires and provided detailed records for a cardiac study. FARA’s fundraising efforts, along with many family/patient participants, have raised millions of dollars for research. We are fortunate to have an organization pursuing a cure for FA with such vigor. We can only be optimistic!
 

Aunt C, Garrett, and crew at Ride Ataxia PA 2010



Thanks Aunt C!  I'll be thinking of you on Patriot's Day, too!